Huy an amazing 12 year old boy living with EB in Vietnam (very difficult to watch)

[helpinghow]

Thank you for your suggestion Storybrett, we have so many video's up, and we are all volunteers doing the best we can in many capacities, I am not the best at detail ;) I appreciate your reminder that I should be a little more clear. There is a link on our website which I can't post here because of YT rules but if you go to helpinghow you can check out the link on our website. Thanks for the heads up and suggestion.

[Storybrett]

Good, but wtf is EB? Can't you just put that in the title and write a bit about it in the desciption?

[helpinghow]

@Storybrett Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.

[Storybrett]

@helpinghow Thank you for the info. It's just hard to find it in google, there are tons of comapnies, a beer brand, a publisher, a soccer team and so on.

[helpinghow]

@Storybrett Thank you! I get so immersed in my work that I just forget that I need to explain. I am so happy you pointed that out, I do it a lot. Beer AND Soccer team... I need to check that out haha... thanks!! See we both learned something new ;)

[Storybrett]

@helpinghow Im glad i could help, I know this very well, when you are into something, you forget that others don't know what is AS or BD or ICD.

And indeed, i learned something, I didn't even know about the disease. (The beer is polish btw and the soccer team is faroese, there is an 'east brunswick soccer club' too. But there will propably not come together. )

[bulegirl430]

truly hurt

[ttconnor1s]

so sad to watch a little boy like this, Where a little boy live?

[KSitz77]

his condition is horrible but I was terribly distracted with him jerking off right into the camera.

[helpinghow]

@KSitz77 Huy constantly itches on his legs and stomach and all over his body, and as a result he hits his wounds to help stop the itching. His skin is constantly breaking down and trying to heal which causes not only severe pain but also itching. EB is a genetic disease and there is no cure, he is a respectable and brave boy.

[TheGabster28]

Now I feel pretty horrible for ever complaining about my eczema. Thank you for posting! It's opened my eyes and I hope to help out!

[00ChinDancers00]

@TheGabster28 same here i feel horible about complaining about me being "semi dyslexic!!" god bless that poor child!

[helpinghow]

@00ChinDancers00 Again, sometimes it takes something we could never imagine to help remind us to appreciate the good things in our life. I am constantly learning and will never stop learning, if I do it's time to throw in the towel... sometimes we get the most amazing lessons from the most unexpected sources. Huy is pure love, this is another reason we hope for a cure for EB. This is Huy's dream for all people living with EB! HIS DREAM! Amazing! Thank you for posting :)

[helpinghow]

@TheGabster28 Eczema is also very painful and we all have our battles. Huy is a constant reminder for me to appreciate my life and when I find myself complaining I think of his strength. When he laughs and makes jokes it makes it easy to forget about his pain, I guess it's a good lesson for all of us to follow his amazing grace and strength :)

[startrekredneck]

This is what pro-life means to me.

[mom4u412012]

to call the day of his funeral and ask why he didnt show up for his appointment, this was the doctor who ignored the sore that was cancer.

still miss you mike

your aunt wanda

[helpinghow]

@mom4u412012 Thank you Aunt Wanda for sharing your story! It sounds like Mike was an amazing young boy who had a lot of love in his life! He was very lucky to have such a loving Aunt and family to give him support and I know the pain never ends. There are so many children who are going through what Mike went through and your story is touching and so sad. We thank you for sharing this with us! You're a great Aunt Wanda!!!

[mom4u412012]

for drivers ed even though he would never have driven a car, he had to take his wheel chair up and down the roads and follow the rules like he would in a car, the night he died the night lit up like day frojm lightening at the moment of death, it rained every day for a week straight except 1 the day of his funeral which was partly cloudy, and cool out side just as his favorit days were. everyone who was close to him woke up at the same time he died, we all found out later. His doctor had a nerve

[mom4u412012]

so you know when mike was born with eb, his doctors told his parents he wouldnt live to see his first birthday he did, he would never walk, he did, there is a drug out there that helps slow down the damage to the muscles. government took it away and shortly after mike stopped walking. said he would never go to school, he would have graduated validictorean sorry about spelling but because he was home schooled he didnt qualify. had to take art and music to graduate but had to pay for it himself.

[threelegbunny3]

Omg, God bless his soul, I am 12 and would hate to go through anything like that, let him live without pain God.....

[helpinghow]

@threelegbunny3 Thank you for posting! You are 12 and so sweet to post about Huy! We think you are wonderful!!

[TheRapiergold10101]

Hes a Brave And Nice Little Kid D: Its Sad To Watch :( But He Is Very Brave And Can He Move Around??

[helpinghow]

@TheRapiergold10101 Yes he is such a brave, funny, smart, delightful boy! He can't walk but we have been donated a special wheelchair for him and are getting some custom cushions made so he can get out and see the world around him. We have some amazing volunteers to visit him and help him with his English and play music for him, laugh with him and spend time. Huy is an inspirations to all that meet him! Thank you for posting!!

[helpinghow]

@TheRapiergold10101 Thank you for the post and yes he is brave, funny, and an inspiration to many! He can't move much only to hold a cup or a light book. He must sit small stool the size of a dinner plate for 4 to 5 hours to be scrubbed each day. His mother is a hero and this is quite painful, he screams out in pain the entire time, but after he says he is grateful! Can you imagine.... inspiration to so many of us!

[mrsright911]

I will do anything to help

[helpinghow]

@mrsright911 Thank you! There are many ways to help our website has loads of ideas or if you want to send me a private message I can give you our website and my personal email. There are many ways to help. You have already started helping by caring!! Thank you so much!!

[mrsright911]

@helpinghow okay thats perfectly fine

[helpinghow]

Thank you so much! We are grateful for your kind heart. Please check out the website there are so many different ways to help :) you can send me a private message for my email or get it off of contact us helpinghow is the name of our website :) Thank you so much. Hillary Brown

[mom4u412012]

ps I hope that continue medical advancements and science one day this disease can be gotten rid of..Michael stratmann my nephew when he was born with it, not much was known about the disease, and was the poster child for a long time. miss you mike aunt wanda

[helpinghow]

@mom4u412012 We have the same dream! There are many working on a cure but we are working on only wound care, this is the best we can do until a cure is found. We all send our regards to your family and thank you for your post!!

[mom4u412012]

god rest all eb victims, from a aunt whos nephew born with eb lost his battle in 1999

[helpinghow]

@mom4u412012 Our thoughts are with you and we are so sorry to hear about your Aunt's Nephew. It is very sad, this is why we work so hard. Your kind words are worth so much to us and all of the children living with EB!

[Paddeiii]

the best thing you could do for this guy is to give him an injection and let him sleep for ever in peace

[helpinghow]

@Paddeiii This is not just "some guy" this is a very wonderful, smart, funny, wonderful, inspiring child. What a sad statement to make when you have not been given the gift of meeting him and knowing that he helps many others in his condition and bears with the pain but also get's joy and laughter with volunteers/ now friends that are given the gift of knowing him.

[mizzstizzie]

i just finishes watching johnny kennedy's documentary. i will be donating to DEBRA-- his foundation for people suffering with this condition. my prayers and love goes out to this wonderful child and anyone who lives their lives through this with such strength. its amazing.

[helpinghow]

@mizzstizzie Thank you for your kindness and we are good friends with DebRA we are thrilled that you were able to make a donation to DebRA! Without their support we would be quite lost in helping these children. I too watched Johnny Kennedy and when I first learned about EB, he gave us all the strength to help children in Vietnam living with EB. Wonderful post thank you so much!!

[IceQeen1011]

Almost cried when he smiled...it was so sad and yet his smile was so adorable. So terribly sad-it's such a horrible disease.

[helpinghow]

@IceQeen1011 We are always so happy when Huy smiles as well! It's so heart warming and he is so funny he makes us laugh all of the time, the things that comes out of his mouth are so funny and he has such a beautiful caring heart. He is a very good friend and we all love him! Huy is an inspiration to all of us. When I am having a hard day I visit Huy or even think about him and am given instant strength to carry on. HOW is blessed to know this young man!! Thank you for your post!

[IceQeen1011]

@helpinghow You're so right. Looking at people who forge forward despite their hardships makes everyone else realize how incredibly lucky we are and also realize how our attitudes can change. He is adorable.

:) God bless that sweetie.

And thank you for your incredible work for our world.

[sotapieru]

People Are Making money whit this, THAT IS SICK, fuck AMERICA !

[helpinghow]

@sotapieru Uhmmm People are NOT making money from Huy or any other HOW activities. We have NO paid staff, all of us work on a volunteer base and if you would like to check us out we are a registered 501(c)3 in the USA, a registered Irish Charity and registered in Vietnam. ALL FUNDS GO TO THE CHILDREN and programs. HOW was started for this very concern though. Perhaps you should check us out so you can get a better understanding of Helping Orphans Worldwide, HOW. Thank you :)

[IceQeen1011]

@helpinghow Great work you guys are doing-truly inspirational...we should put you guys on vogue instead of super skinny fake models-because you're true inspiration for society. :)



[helpinghow]

@IceQeen1011 Thank you for such a sweet post! We all work from our hearts and the gifts we are given through the joy of the children is worth more than anything one could imagine. Our team of volunteers are growing and their payment of happiness keeps them coming back :) Thank you for your post!

[sheliescold]

@sotapieru youre an idiot. the only people making money are the kids who are sick, who need that money for supplies for thier disease, yeah theyre benifiting a whole bunch, you ignorant fool.

[helpinghow]

EB (Epidermolysis Bullosa) is a rare genetic skin disease that causes the skin to be so fragile that even the slightest touch will separate the layers of the skin. The skin literally breaks, resulting in painful blisters and open wounds. A mother may never be able to hold her child tightly because the skin would peel off and bleed. Children with EB may never run or play as other children because even the slightest friction will cause them great pain. You can send me a personal msg for more info.

[AraiaHikari]

EB?



[tenderheart17]

@AraiaHikari

yes...the full name of the condition is 'Dystrophic Epidermolysis Bullosa'.

[helpinghow]

@tenderheart17 Thank you Tenderheart!!! :) Much appreciated!! 

[tenderheart17]

@helpinghow

I hope I wasn't answering out of turn? If I have, I'm sorry. I'd just come to Huy's video after watching the series about Johnny Kennedy. Just thinking about the dressings used on EB patients....are they the kind that don't adhere to the skin, similar to dressings used for elderly people with very fragile skin?

[helpinghow]

@tenderheart17 No we love it!! We appreciate all of the clarity we can get. Sometimes I just move a little quick and miss something, we are thrilled when we get the correct information posted! We welcome all help we can get, in every way!! Yes you are correct there can be nothing sticky for the wound care, only vaseline coated gauze and many other types of wound care for delicate skin (think like treating a 3red degree burn but worse). Thank you for your for your caring heart!!

[tbraasch]

I have EB. If can help other than funds (which I 've done) tedecho@hotmail.com

[helpinghow]

@tbraasch I think it's wonderful that you have helped in many ways. We are always happy to get letters for Huy, he loves them. There are many ways other then funds that can help Huy and the other children we help. We are happy to translate any letter you send. If want to do this please send me a private message so I can give you our site to get the info and I can give you more detail. We will be thrilled to have your letter translated. He loves to get letters and even photos :)

[IceQeen1011]

@helpinghow I'm not earning or anything so I'm afraid I can't contribute financially (yet) but I'd love to write to this cute baby...I don't know if that's any help but he just seems so sweet.

[tbraasch]

Please help....debra.org



[annie123ya]

Oh my gosh, this is sooooooooooooooooooooo sadd :[[ God bless him and god bless you for helping him and visting him!!!!